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At 01:53 PM 1/24/00 +0100, wisely said:

>I feel rather guilty, as I haven't been posting much lately.

>I think that a lot of us go through periods where we just don't feel like

>sharing

I am sure we all feel that way, and some of us most of the time.

Our problems put a wet blanket on our wants, needs & activities. But if we

don't fight back, we lose.

Don't take too much guilt on yourself hers. we have 140 registered

members, and of those there is some question whether about 25 are getting/

sending our posts that I have just done something about.

140 members should be well above critical mass for a list to be a

conduit for personal relationships. But this list has been acting like it

is in the deep freeze, & I don't know why.

Ken

----------

Turbin | Mailto:kturbin@... | webmaster@...

Net Biz Development | *Page me: http://www.mirabilis.com/17198172

Tel. (702) 312- 6888 | Fax | GetICQ http://www.icq.com/

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At 01:53 PM 1/24/00 +0100, wisely said:

>I feel rather guilty, as I haven't been posting much lately.

>I think that a lot of us go through periods where we just don't feel like

>sharing

I am sure we all feel that way, and some of us most of the time.

Our problems put a wet blanket on our wants, needs & activities. But if we

don't fight back, we lose.

Don't take too much guilt on yourself hers. we have 140 registered

members, and of those there is some question whether about 25 are getting/

sending our posts that I have just done something about.

140 members should be well above critical mass for a list to be a

conduit for personal relationships. But this list has been acting like it

is in the deep freeze, & I don't know why.

Ken

----------

Turbin | Mailto:kturbin@... | webmaster@...

Net Biz Development | *Page me: http://www.mirabilis.com/17198172

Tel. (702) 312- 6888 | Fax | GetICQ http://www.icq.com/

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  • 1 year later...
  • 8 months later...
Guest guest

Wesley has been eating a lot of tuna this week too. He likes mayo in

it. We went to two pizza places this wee. He doesn't like pizza,

so he ate tuna salad(albacore). He ate all of it.

Need to go and ice the cake.

Patty, love to you, Crystal and your family

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Guest guest

Wesley has been eating a lot of tuna this week too. He likes mayo in

it. We went to two pizza places this wee. He doesn't like pizza,

so he ate tuna salad(albacore). He ate all of it.

Need to go and ice the cake.

Patty, love to you, Crystal and your family

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Guest guest

Wesley has been eating a lot of tuna this week too. He likes mayo in

it. We went to two pizza places this wee. He doesn't like pizza,

so he ate tuna salad(albacore). He ate all of it.

Need to go and ice the cake.

Patty, love to you, Crystal and your family

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  • 5 months later...

My dear

I'm sorry to hear about Crystal's dilemma. She is always in my thoughts.

Wes is still taking Carbatrol(sp)similiar to Tegretol. The Topamax was

upped this past March. So far no seizures since then.

How old is Crystal again? Three? Four? OUr neuro said that kids with

PMG tend to start those awfull things (seizures) around three or four.

I still give applesauce to Wes with his combination cocktail.

He doesn't like it, but tolerates it a little better. He's a good kid

like I know your sweety is.

I'll be thinking of you tomorrow has we honor those who perished

last year. Hard to believe that a year has gone by.

My friend take care and God Bless.

Patty mom to the Wesley boy with the smile.

_________________________________________________________________

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My dear

I'm sorry to hear about Crystal's dilemma. She is always in my thoughts.

Wes is still taking Carbatrol(sp)similiar to Tegretol. The Topamax was

upped this past March. So far no seizures since then.

How old is Crystal again? Three? Four? OUr neuro said that kids with

PMG tend to start those awfull things (seizures) around three or four.

I still give applesauce to Wes with his combination cocktail.

He doesn't like it, but tolerates it a little better. He's a good kid

like I know your sweety is.

I'll be thinking of you tomorrow has we honor those who perished

last year. Hard to believe that a year has gone by.

My friend take care and God Bless.

Patty mom to the Wesley boy with the smile.

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

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My dear

I'm sorry to hear about Crystal's dilemma. She is always in my thoughts.

Wes is still taking Carbatrol(sp)similiar to Tegretol. The Topamax was

upped this past March. So far no seizures since then.

How old is Crystal again? Three? Four? OUr neuro said that kids with

PMG tend to start those awfull things (seizures) around three or four.

I still give applesauce to Wes with his combination cocktail.

He doesn't like it, but tolerates it a little better. He's a good kid

like I know your sweety is.

I'll be thinking of you tomorrow has we honor those who perished

last year. Hard to believe that a year has gone by.

My friend take care and God Bless.

Patty mom to the Wesley boy with the smile.

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

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  • 1 month later...

OMG! The genetic doctor we spoke to said the same thing to us! He said

Skylar wouldn't live outside of a hospital or hospice! But Skylar has proved all

those disbelievers WRONG! it seems they do not know the power of Faith and

Love!

Keeping everyone in my prayers~ Candi, mother of Skylar Tennessee, age 19

months

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OMG! The genetic doctor we spoke to said the same thing to us! He said

Skylar wouldn't live outside of a hospital or hospice! But Skylar has proved all

those disbelievers WRONG! it seems they do not know the power of Faith and

Love!

Keeping everyone in my prayers~ Candi, mother of Skylar Tennessee, age 19

months

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  • 1 month later...

Sorry to hear about Crystal's troubles. I'll be praying for her and

your family.

Any word on adding/changing meds again. What a drag.

Love to all of you,

Patty, mom to the sunshine boy(who is growing up)

_________________________________________________________________

Add photos to your messages with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

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Sorry to hear about Crystal's troubles. I'll be praying for her and

your family.

Any word on adding/changing meds again. What a drag.

Love to all of you,

Patty, mom to the sunshine boy(who is growing up)

_________________________________________________________________

Add photos to your messages with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

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  • 3 weeks later...

Hi,

I have a question? My son Jorden was diagnosed with Bilateral Persiylvian

Polymicrogyria when he was 10 months old. He is now 27 months old. When we

found out his condition the doctors told us that he could have seizures, well

he does now. The only way we knew he was having them was he had a sleep study

done and it was showing up on the test. It showed he was having as many as 25

a hour but they were really mild. That has been almost a year ago. We have had

to increase his phenobarb to 2 tsp twice a day. We are noticed that he is

having them still and they are getting stronger and stronger. With your child

did she have seizures from birth and were they always strong? Im just

wondering if there is more l should be doing.

Thank you

Marilyn Jorden's mom

> Hello, dear... I just reread your last post to

> the group. We're having such

> a hard time with Crystal's seizures. I wanted

> to ask you a few questions

> concerning Salla. 1st, what exactly IS Salla's

> diagnosis ??? Has she been

> diagnosed with Bilateral Perisylvian

> Polymicrogyria or Congenital Bilateral

> Perisylvian Syndrome ??? What type(s) of

> seizures was Salla experiencing

> before the surgery ??? How extensive IS the

> surgery ( Corpus Callosotomy )

> ??? How long was she in the hospital ??? It

> seems that it's not a very

> popular surgery in the USA. This doesn't mean

> that I won't do everything in

> my power to find a doctor to do it, if need be.

> I've become very determined

> & persistent when it comes to my children &

> their health concerns...

> We have an appointment on 1/2 to see a

> Neurologist who specializes in the

> Vagal Nerve Stimulator... I really think that

> it's going to be our next step

> in our attempt to help Crystal. I can so

> sympathize with what you went

> through with Salla. We're going through

> something very similar with Crystal

> right now. She's already had 3 tonic attacks

> today. They are very similar to

> drop attacks. What happens to her, is that

> she'll fall either forwards or

> backwards. Her arms ( & sometimes legs ) will

> go upwards & outwards.

> Unfortunately, this prevents her from

> protecting her face when she falls

> forwards. Poor little thing has a broken nose &

> a bruised chin right now. We

> just very recently got her a helmut with a

> large rubber visor built into the

> front of it. We're hoping that it will prevent

> her from hurting her face

> anymore. Unfortunately, I couldn't find it

> until after her last attack

> today. She had her old helmut on, but it didn't

> protect her face. Poor

> little thing now has a swollen lip. She was

> bleeding for quite awhile from

> inside her mouth. I still don't know exactly

> what she hurt. My best guess is

> she either bit her tongue or her lip, when she

> seized. This situation is

> just unacceptable. My child is on 3 different

> seizure meds & she's still

> seizing all day long. To say that it's driving

> me to distraction, is a major

> understatement !!!!!!! She's been having

> seizures every few minutes, where

> her head will tilt to the right. Then it starts

> to go down, until it drags

> the rest of her body down with it. At the same

> time, her right eye is

> partially closed & twitching. At this point,

> she either catches herself or

> falls. NOONE should have to go through this

> every few minutes. It took my

> child at least 1/2 hour to eat a small bowl of

> soup. She kept falling into

> her bowl. My cousin was eating dinner with us.

> Just seeing the horror &

> sadness on her face was heartbreaking. Crystal

> is her Godchild & she loves

> her very much...

> Anyway, I better go. I didn't mean to bring you

> down. I hope that your Salla

> is continuing to progress & will be walking on

> her own VERY soon !!!

>

> Give your beautiful little girl lots of {{{

> HUGS & KISSES }}} from her

> Auntie & Cousin Crystal in the USA !!!

>

> With lots of luv to you all...

>

> & her Princess Angel, Crystal Aquielle -

> Bilateral Perisylvian PMG -

> Grade 3...

>

>

>

>

>

>

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Hi,

I have a question? My son Jorden was diagnosed with Bilateral Persiylvian

Polymicrogyria when he was 10 months old. He is now 27 months old. When we

found out his condition the doctors told us that he could have seizures, well

he does now. The only way we knew he was having them was he had a sleep study

done and it was showing up on the test. It showed he was having as many as 25

a hour but they were really mild. That has been almost a year ago. We have had

to increase his phenobarb to 2 tsp twice a day. We are noticed that he is

having them still and they are getting stronger and stronger. With your child

did she have seizures from birth and were they always strong? Im just

wondering if there is more l should be doing.

Thank you

Marilyn Jorden's mom

> Hello, dear... I just reread your last post to

> the group. We're having such

> a hard time with Crystal's seizures. I wanted

> to ask you a few questions

> concerning Salla. 1st, what exactly IS Salla's

> diagnosis ??? Has she been

> diagnosed with Bilateral Perisylvian

> Polymicrogyria or Congenital Bilateral

> Perisylvian Syndrome ??? What type(s) of

> seizures was Salla experiencing

> before the surgery ??? How extensive IS the

> surgery ( Corpus Callosotomy )

> ??? How long was she in the hospital ??? It

> seems that it's not a very

> popular surgery in the USA. This doesn't mean

> that I won't do everything in

> my power to find a doctor to do it, if need be.

> I've become very determined

> & persistent when it comes to my children &

> their health concerns...

> We have an appointment on 1/2 to see a

> Neurologist who specializes in the

> Vagal Nerve Stimulator... I really think that

> it's going to be our next step

> in our attempt to help Crystal. I can so

> sympathize with what you went

> through with Salla. We're going through

> something very similar with Crystal

> right now. She's already had 3 tonic attacks

> today. They are very similar to

> drop attacks. What happens to her, is that

> she'll fall either forwards or

> backwards. Her arms ( & sometimes legs ) will

> go upwards & outwards.

> Unfortunately, this prevents her from

> protecting her face when she falls

> forwards. Poor little thing has a broken nose &

> a bruised chin right now. We

> just very recently got her a helmut with a

> large rubber visor built into the

> front of it. We're hoping that it will prevent

> her from hurting her face

> anymore. Unfortunately, I couldn't find it

> until after her last attack

> today. She had her old helmut on, but it didn't

> protect her face. Poor

> little thing now has a swollen lip. She was

> bleeding for quite awhile from

> inside her mouth. I still don't know exactly

> what she hurt. My best guess is

> she either bit her tongue or her lip, when she

> seized. This situation is

> just unacceptable. My child is on 3 different

> seizure meds & she's still

> seizing all day long. To say that it's driving

> me to distraction, is a major

> understatement !!!!!!! She's been having

> seizures every few minutes, where

> her head will tilt to the right. Then it starts

> to go down, until it drags

> the rest of her body down with it. At the same

> time, her right eye is

> partially closed & twitching. At this point,

> she either catches herself or

> falls. NOONE should have to go through this

> every few minutes. It took my

> child at least 1/2 hour to eat a small bowl of

> soup. She kept falling into

> her bowl. My cousin was eating dinner with us.

> Just seeing the horror &

> sadness on her face was heartbreaking. Crystal

> is her Godchild & she loves

> her very much...

> Anyway, I better go. I didn't mean to bring you

> down. I hope that your Salla

> is continuing to progress & will be walking on

> her own VERY soon !!!

>

> Give your beautiful little girl lots of {{{

> HUGS & KISSES }}} from her

> Auntie & Cousin Crystal in the USA !!!

>

> With lots of luv to you all...

>

> & her Princess Angel, Crystal Aquielle -

> Bilateral Perisylvian PMG -

> Grade 3...

>

>

>

>

>

>

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Thanks for writing me back. Jorden is only on phenobarbitol. I hate giving it

to him because it makes him so sleepy all the time. He takes 2 teaspoons in

the morning and the 2 tsp at bed time. Like l said before we didn't notice any

seizures at first. He went for a sleep study to see if he was having trouble

breathing while he slept. That's when they noticed he was having seizures. We

had noticed that at times he would space out for short periods of time, but we

just figured it was his way of ignoring us. Now we have noticed that he

tightens up real stiff and his legs shakes for about 15 seconds. He also

arches his back up and stiffens out. Then he is really upset and cries

afterwards.

The neuro that seen my son doesn't practice in my city. He comes from

Children's Hospital in Seattle. My son has never had a EEG done. He only comes

every 6 months to see my son. Where l live services for children are very

limited. My doctor doesn't know really how to treat my son. Since the state

has done so many cut backs lm unable to change doctors to someone who might be

able to treat my son and his medical conditions. Its been left up to me to

find different means of treatment for him. If it wasn't for being able to

email other people like you l would still be in the dark on alot of issues.

Thank you for the reply.

Marilyn

> We didn't know that there was anything wrong

> with Crystal, until she was 4

> mos. old. She started presenting with Infantile

> Spasms. Thank God, her

> pediatrician immediately sent us to the

> hospital. After obseving her

> overnight, the hospital transferred her to

> Medical Center's Regional

> Children's Center. Unfortunately, the neuro

> there was not very informed. She

> had an MRI done in the 1st hospital she was

> admitted into. He misread her

> MRI . She had an EEG done at the 1st hospital.

> The report from it stated

> that hypsarrythmia was present. This is

> indicative of Infantile Spasms. He

> disregarded that EEG & report. He kept

> repeating her EEGS every 2 weeks, &

> insisted that she was having Myoclonus of

> Infancy. This is a benign

> condition that babies grow out of. He placed

> her on phenobarbitol.

> Phenobarbitol does not work on Infantile

> Spasms. This did not stop her

> seizures. It just dampened them down, so that

> they were harder to detect.

> She slept almost all of the time. She stopped

> waking up to nurse. He took a

> blood level, to determine if she was toxic on

> the stuff, & then never called

> me to tell me the results. She WAS toxic. I

> called her pediatrician & he

> looked at the results & told me so. He was

> shocked that the neuro never

> contacted me. At this point, he sent me to

> Children's Hospital of

> Philadelphia. Since it was out of state, I had

> to go through the ER. They

> correctly diagnosed her as having Infantile

> Spasms. They did a second MRI on

> her. They told me that she had Cerebral

> Cortical Dysgenesis. Dr. Dobyns is

> the one who looked at her films later on &

> told me that she has Bilateral

> Perisylvian PMG. CHOP took her off of

> Phenobarbitol & put her on ACTH to

> stop the Infantile Spasms. Within 5 days she

> was seizure free. She stayed

> that way until just before her 3rd birthday.

> One morning, I found her semi-conscious on her

> bedroom floor. My mom & I

> rushed her to the ER. She lost consciousness

> enroute. She stayed unconscious

> for about 2 hours. They infused her with

> glucose water, which helped to

> revive her. Her neuro at the time ( we're

> presently on neuro # 4 ) had

> another EEG done on her. For the 1st time in 2

> 1/2 years, it showed

> extensive seizure activity. He started her on

> lamictal. She broke out in a

> rash within the 1st month. At that point I

> changed neuros, because he wanted

> to place her back on the lamictal once the rash

> cleared up & I didn't !!! A

> rash from lamictal can turn necrotic. A

> necrotic rash can be fatal. I just

> wasn't willing to put my daughter's life on the

> line. The new neuro ( he's

> the one that we're presently using ) started

> her on Depakote. Her seizures

> started to present as staring spells. Since

> then, she's been on quite a few

> seizure meds. She now has staring spells &

> tonic seizures ( the falling

> down ones I described to Suvi ). I don't think

> the meds are doing much at

> all to help her.

> What kind of seizures is Jorden having ???

> Phenobarbitol only works on

> certain seizure types...

>

> I wish you all the best in finding the right

> meds to help your son.

>

> Give him a great big {{{ HUG & KISS }}} for

> us...

>

> Take care & be well...

>

> - mommy of my Angel Princess, Crystal

> Aquielle - almost 5 years old -

> BPP - Grade 3...

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

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Thanks for writing me back. Jorden is only on phenobarbitol. I hate giving it

to him because it makes him so sleepy all the time. He takes 2 teaspoons in

the morning and the 2 tsp at bed time. Like l said before we didn't notice any

seizures at first. He went for a sleep study to see if he was having trouble

breathing while he slept. That's when they noticed he was having seizures. We

had noticed that at times he would space out for short periods of time, but we

just figured it was his way of ignoring us. Now we have noticed that he

tightens up real stiff and his legs shakes for about 15 seconds. He also

arches his back up and stiffens out. Then he is really upset and cries

afterwards.

The neuro that seen my son doesn't practice in my city. He comes from

Children's Hospital in Seattle. My son has never had a EEG done. He only comes

every 6 months to see my son. Where l live services for children are very

limited. My doctor doesn't know really how to treat my son. Since the state

has done so many cut backs lm unable to change doctors to someone who might be

able to treat my son and his medical conditions. Its been left up to me to

find different means of treatment for him. If it wasn't for being able to

email other people like you l would still be in the dark on alot of issues.

Thank you for the reply.

Marilyn

> We didn't know that there was anything wrong

> with Crystal, until she was 4

> mos. old. She started presenting with Infantile

> Spasms. Thank God, her

> pediatrician immediately sent us to the

> hospital. After obseving her

> overnight, the hospital transferred her to

> Medical Center's Regional

> Children's Center. Unfortunately, the neuro

> there was not very informed. She

> had an MRI done in the 1st hospital she was

> admitted into. He misread her

> MRI . She had an EEG done at the 1st hospital.

> The report from it stated

> that hypsarrythmia was present. This is

> indicative of Infantile Spasms. He

> disregarded that EEG & report. He kept

> repeating her EEGS every 2 weeks, &

> insisted that she was having Myoclonus of

> Infancy. This is a benign

> condition that babies grow out of. He placed

> her on phenobarbitol.

> Phenobarbitol does not work on Infantile

> Spasms. This did not stop her

> seizures. It just dampened them down, so that

> they were harder to detect.

> She slept almost all of the time. She stopped

> waking up to nurse. He took a

> blood level, to determine if she was toxic on

> the stuff, & then never called

> me to tell me the results. She WAS toxic. I

> called her pediatrician & he

> looked at the results & told me so. He was

> shocked that the neuro never

> contacted me. At this point, he sent me to

> Children's Hospital of

> Philadelphia. Since it was out of state, I had

> to go through the ER. They

> correctly diagnosed her as having Infantile

> Spasms. They did a second MRI on

> her. They told me that she had Cerebral

> Cortical Dysgenesis. Dr. Dobyns is

> the one who looked at her films later on &

> told me that she has Bilateral

> Perisylvian PMG. CHOP took her off of

> Phenobarbitol & put her on ACTH to

> stop the Infantile Spasms. Within 5 days she

> was seizure free. She stayed

> that way until just before her 3rd birthday.

> One morning, I found her semi-conscious on her

> bedroom floor. My mom & I

> rushed her to the ER. She lost consciousness

> enroute. She stayed unconscious

> for about 2 hours. They infused her with

> glucose water, which helped to

> revive her. Her neuro at the time ( we're

> presently on neuro # 4 ) had

> another EEG done on her. For the 1st time in 2

> 1/2 years, it showed

> extensive seizure activity. He started her on

> lamictal. She broke out in a

> rash within the 1st month. At that point I

> changed neuros, because he wanted

> to place her back on the lamictal once the rash

> cleared up & I didn't !!! A

> rash from lamictal can turn necrotic. A

> necrotic rash can be fatal. I just

> wasn't willing to put my daughter's life on the

> line. The new neuro ( he's

> the one that we're presently using ) started

> her on Depakote. Her seizures

> started to present as staring spells. Since

> then, she's been on quite a few

> seizure meds. She now has staring spells &

> tonic seizures ( the falling

> down ones I described to Suvi ). I don't think

> the meds are doing much at

> all to help her.

> What kind of seizures is Jorden having ???

> Phenobarbitol only works on

> certain seizure types...

>

> I wish you all the best in finding the right

> meds to help your son.

>

> Give him a great big {{{ HUG & KISS }}} for

> us...

>

> Take care & be well...

>

> - mommy of my Angel Princess, Crystal

> Aquielle - almost 5 years old -

> BPP - Grade 3...

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

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  • 5 years later...
Guest guest

Hey ,

I'm confused - I can't remember your history but did you recently stop doing alcohol/drugs? I'm sorry if this is not you....I seem to recall reading that - don't meant to offend you if it isn't you....... To have one's ALT/AST drop by hundreds is pretty strong - that doesn't explain how cmv was even involved - it is a herpes virus and if it is a problem (as your doctor suspected) then one is usually prescribed an anti-viral, like Valtrex. But then again, my last zoster level was lower than ever but I still had a slight outbreak going on - so who knows with these HHV tests? As you said, most folks have been exposed to CMV, as well as most of the other herpes viruses. Viral levels do change...... but a drop of your lft's like that is not due to any herpes virus!

Thanks for your reply - you're doing great!

Chris

I actually have not been taking any milk thistle, or anything else. For the cytomegalovirus, they did not prescribe me anything, the numbers just went down on their own( I guess since it is such a common virus, that alot of people have.) Hopefully everything works out with the treatment. Thanks.

Peace, Love, Happiness

Vote for your city's best dining and nightlife. City's Best 2008.

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Guest guest

I am seropositive for CMV, EBV, HSV, and VZV. All this means is they

will have to treat me for these wonderful little virus after my liver

TP but as for now no worries.

In Hepatitis_C_Central , smalk50@... wrote:

>

> Hey ,

>

> I'm confused - I can't remember your history but did you recently

stop doing

> alcohol/drugs? I'm sorry if this is not you....I seem to recall

reading

> that - don't meant to offend you if it isn't you....... To have

one's ALT/AST

> drop by hundreds is pretty strong - that doesn't explain how cmv

was even

> involved - it is a herpes virus and if it is a problem (as your

doctor suspected)

> then one is usually prescribed an anti-viral, like Valtrex. But

then again,

> my last zoster level was lower than ever but I still had a slight

outbreak

> going on - so who knows with these HHV tests? As you said, most

folks have

> been exposed to CMV, as well as most of the other herpes viruses.

Viral levels

> do change...... but a drop of your lft's like that is not due to

any herpes

> virus!

>

> Thanks for your reply - you're doing great!

>

> Chris

>

>

>

> In a message dated 6/15/2008 10:21:46 P.M. Central Daylight Time,

> jbiomb@... writes:

>

>

>

>

>

> I actually have not been taking any milk thistle, or anything else.

For the

> cytomegalovirus, they did not prescribe me anything, the numbers

just went

> down on their own( I guess since it is such a common virus, that

alot of people

> have.) Hopefully everything works out with the treatment. Thanks.

> Peace, Love, Happiness

>

>

>

>

>

>

>

>

>

>

> **************Vote for your city's best dining and nightlife.

City's Best

> 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102)

>

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